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Total Independence

Total Independence

My accident happened on April 26, 2014. Ten days later a doctor told me I would never walk again. Five months after that at the VA hospital I was hanging from a harness over a treadmill while a walking simulator drove my legs. Everyone hoped that my brain would pay attention. It did. Five months after that I stopped using the Locomat harness. Now it was up to me to support my entire body weight when I was on the treadmill.

At the same time that I was undergoing Locomat treadmill training on the second floor, I was starting a new kind of training in the gymnasium. On November 14, 2014, at 2:50 PM to be precise, seven months after my injury, my therapists put me into an overhead harness and had me walk between parallel bars. I took one step. It was the first step since the accident. The overhead harness took up most of my body weight. In the Locomat room I continued walking with a harness, but this time it is there just for safety's sake. Six months and 19 days had elapsed since my accident.

Two months after that, on January 21, 2015, I had mastered sitting to standing well enough to use that skill at home so that I wouldn’t need an overhead hoist to get in and out of bed, a major breakthrough.

In the gymnasium I graduated from the parallel bars. I began to walk over ground with a harness and a rolling walker, one of those contraptions that you lean on with two wheels in the front and two rubber stoppered legs in the back. In the beginning the harness helped support my weight. But as time went on the harness was used more and more just for safety. Eleven months had passed since the accident. It was March 2015.

Three months later, 15 months after my accident, I was using the rolling walker without a harness. Two months after that—17 months had passed since the accident—I walked without a harness and with a rollator, a rolling device with four wheels, two in the front and two in the back with a seat that you can sit in when you're tired, brakes for better control and a basket in the front when you go shopping. Very fancy.

When I went home on November 3, 2014, I was still two weeks away from taking my first “official” step. An infant's gestation period later I had become “a community ambulator.” I was able to say, “Goodbye, Nancy. I’m going for a walk.” By November 3, 2015, one year after I had moved in, a year and a half after a doctor told me that, realistically, I would never walk again, I was walking a mile a day.

Five months after that and with prodding from Jess and Barbara and a visiting nurse, I decided not to use a wheelchair in the apartment anymore. Any time I changed locations, I did it like everyone else. I got up and walked. When guests came, I sat in a stuffed chair in the living room. When there was company for dinner, I sat at the table in a swivel chair whose height is adjustable. In the morning I sat in the breakfast nook. When I worked during the day, I sat at my desk. Whenever I went from one to the other, I got up, grabbed the Rollator and walked.

I could have stopped here. But I didn’t. In July 2016 I went back to the VA hospital and asked Jess to teach me how to walk with both crutches and canes. I’m working on that now, as I write this. I can walk a half a mile at the hospital with either. Jess thinks that by the end of September, six weeks from now, I’ll be able to walk unattended with crutches at home. Canes will take a little bit longer. That will be two years and five months since the accident.

A friend recently asked me, "What's wrong with walking with a Rollator and leaving it at that?"

I replied by quoting a line from Browning’s Andrea del Sarto, "Ah, but a man's reach should exceed his grasp, Or what's a heaven for?”

If I didn't have a goal to aim for when I get up each day, I feel as if something isn’t quite right, something I can’t put my finger but whose absence leaves me feeling edgy. In any event I will not run out of goals. Even if I never manage to put one foot in front of the other without something to help me, there is always travel to think of. Can I possibly manage a trip to visit my daughter in Montana or my son in Ireland? What about something much less adventurous, community ambulation? Can I walk to our nearest restaurant three blocks away? Will I be able to manage the pavement with my canes? Will I be able to get into and out of a chair once I get there?

Well, a man's reach should exceed his grasp, or what's a heaven for?

A gradual change had taken place in me after I left the VA hospital. While there and during the time of my outpatient therapy, my goal was simply to walk again. Once I started doing that with some degree of skill, I upped the ante. My goal was total independence. It seemed like a simple thing. But as I began to reach for it, I discovered that it was far more complicated than I ever anticipated.

As of now I can get up out of bed and, always with the aid of my walker, walk into the bathroom, do my morning chores, take a shower, dry myself, walk back to my bed and, sitting on the edge, put on my pants and shirt. With a very cleverly designed tool worth maybe a dollar, I put on my shoes and socks. Whoever thought of that deserves a statue in a decent park somewhere. With the help of another such tool—it’s called a “Bottom Buddy,”—I can have a bowel movement on my own whenever I need to. I can also void whenever necessary, thanks to my ability to stand up at will. Recently, Nancy and I went to the movies. It was a long one. I made the mistake of ordering a beer to take in with me. I did it partly because I wanted to see if the bartender could card an 80-year-old man in a wheelchair with a straight face. He could. Anyway, the upshot was that I had to go to the bathroom halfway through the movie. I leaned over and told Nancy. She started to get up to accompany me. I told her to stay where she was. I could handle it. And I did. It's striking how a spinal cord injury reduces one's triumphs to those of a three-year-old.

All of that is to the good. But there is a kicker. Someone has to put handy wipes within reach of the commode. Someone has to hang a towel on the towel rack for my shower. Someone has to put a towel on the shower bench to keep me from slipping. Someone has to lay out my clothes in the morning. Someone has to make my bed, clean the shower, wash the clothes. Someone has to do the shopping. I suppose I could manage most of those on my own, though not the shopping. The problem is that if I go without help, then I am forced to make a career out of the ADL’s, the activities of daily life. I tried to make my bed once. It took me three quarters of an hour. My current caregiver manages it in five minutes.

For almost every new thing that I can do on my own, I need back up to help me to do it. In this respect I’m not so different from everyone else. If you have a car, you need a mechanic. If you don't, you need a subway. If you want to make your own meals, you need a grocery store. That's just the way it is. Much of what we do “on our own” we are only able to do because there are hundreds of support systems in place that make it possible. I am no different. Whatever I do on my own, I can do because somebody is enabling me. The question is: Who is that someone?

Lord knows total independence is hard enough for healthy couples to achieve, let alone for a couple, one of whom has suffered severe trauma. For the healthy a lot of bargaining goes on about who will clean up, take the children to hockey practice, pay the taxes, do the shopping and so on. Normally the resolution involves a straightforward agreement on the division of labor. But for couples, one of whom has a spinal cord injury, things are complicated. The complication is a diabolical one. The more independent the patient becomes, the less independent the spouse can become. Here's how it works.

Each time I managed to do something the caregiver had been doing for me, it got harder to justify the need for her. That was comp$317ounded by the fact that often the need for a caregiver, even though it was critical, was not very labor-intensive.

Yet Nancy is jubilant when she remembers those days in the ICU in MGH, the ones that led her to write on May 9, 2014:

[The doctor's] prognosis at this time is that Jay may regain strength and limited mobility in his upper body (shoulders, arms, hands) but will unlikely have any mobility in his lower body. There is no timetable to speak of, other than the rehabilitation will be lengthy and Jay has a lot of hard work ahead of him, which he is anxious to get started on. After rehab, he will be re-evaluated and a decision for future care will be made. As it looks now, he'll almost definitely need care 24/7.

She likens my progress to those stories one occasionally reads about where someone, trapped under a collapsed building for a fortnight, is found alive.

I take her happiness as a sign of my success.

If someone were to ask me what my greatest achievement over the past twenty months has been, I wouldn’t put walking or freedom or even playing the trombone at the top of the list. It would be a conversation I had with Nancy when she was driving me to the VA hospital for my annual SCI examination. I found these rides a good venue for important conversations.

“Do you feel more like a wife or a caregiver?” I asked.

Without missing a beat, she answered, “A wife. Definitely.”

Her response is my greatest achievement.

Even so I'll be damned if I’ll stop now. I can easily imagine someone reading this and thinking that I have come such a long way that Nancy shouldn’t complain about what still needs to be done. Nancy would agree. But I wouldn’t. Total independence in the full sense of the term is my goal, not hers.

I’ll get there if it kills me, which it probably will. Today at my urging Nancy bought a crockpot. I used to do all the cooking for us. I’m going to try to again. I figure crockpot cooking is a good way to start. It’s mostly cutting up things, adding liquid and seasoning and then waiting while the pot does the rest. I can’t wait to give it a try. I may even write a cookbook for spinal cord injured cooks. Now there’s a market niche.

As I said, there are obstacles galore beyond cooking still ahead. They parade before me like ducks in a shooting gallery. So long as I have the ammo, I'll keep shooting.

Photo by Samuel Zeller on Unsplash

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